Online fortune teller: how DNA telomeres can put your life on the web

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Telomeres and aging

Longer telomeres may mean longer life. Photo via ScienceFictionBiology.blogspot.com

Have you heard of telomeres? They are structures on the tips of your chromosomes that may be able to predict how fast you will age.

Will you live to 60, 70, 80, 90 or beyond?

Today we can only guess how long we’ll live based on our parents’ and grandparents’ health and our medical state.  But several widely accepted and peer reviewed tests have shown that the length of your telomeres is strongly correlated to how long you may live.  In general, longer telomeres mean longer life.  These tests are getting better, and they’re getting cheaper:  in fact, a UK company called LifeLength is rolling them out to anyone willing to pay about $700.

Would you pay $700 to know if you’ve got a good chance to make it to 100?

As with many other kinds of healthcare and genetic testing information, it’s easy to make it available to you online. 23andme, a Google-backed genetic testing company, has been a pioneer of this technology and of using the internet to distribute this personal health information to customers.  Their price for a genetic profile test is only $99 and is based on your saliva sample rather than blood testing.  The site claims that they test for 24 different inherited conditions, including sickle cell anemia and cystic fibrosis.

23andme saliva genetic test

23andme uses a saliva sample to provide your genetic profile.

Although only a very small number of people currently use these personal health technology testing services, they’re relevant to all of us because we’re all human.  As more of us access this information, what will happen to this data?

  • Data online about how long you’re “scheduled” to live
  • Data online about if you’re likely to go bald
  • Data online about if you’re likely to get cancer
  • Data online about whether you’re likely to carry a genetic mutation

You may have a social networking profile online, but what about a genetic profile online?

Will insurance companies charge higher premiums to people with less positive genetic profiles, or, even worse, refuse to insure them altogether?  Will employers only hire people with positive genetic attributes and disfavor, or fire, those of us

Genetic discrimination

We already fight gender discrimination, racial discrimination…what about genetic discrimination?

who are less genetically fortunate?  Will our potential dates eliminate us based on our genetic likelihood of balding?

These are open questions, but our experience helping hundreds of users delete just their basic personal information–address, phone number, name–from websites like Intelius, Spokeo, and Whitepages.com (and more than a dozen others) doesn’t give us a lot of confidence that things are moving in the right direction.  Furthermore, deleting your prescription information and health history from retailers like CVS is even more difficult.

Furthermore, just glancing (forget about reading) at the privacy statements from these genetic testing companies doesn’t exactly give someone faith that they’re looking out for their users’ privacy.  For example, 23andme’s Privacy Statement reads,

We may disclose to third parties, and/or use in our Services, “Aggregated Genetic and Self-Reported Information”, which is Genetic and Self-Reported Information that has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence.

Will you want the benefits of new personal health technologies?  Many of you will.  Will you be willing to accept the risks of your personal information and health privacy being violated?  Many of you won’t.  Let us know your thoughts – especially if you’re an existing subscriber to these services who can share your experiences with the community.

PS:  at least it’s nice to know that the TSA is not going to be adding DNA testing to its pat-down process.

5 Replies to “Online fortune teller: how DNA telomeres can put your life on the web”

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